Strict treatment vs. quality of life: Where do you draw the line? ⚖️

How to start, I have severe RA and COPD plus other nasty stuff. I have always said I am in charge not my RA or any other disease. Then this Fall I could not breath literally and ended up in the hosp . It was a very close call, my bronchial tunes had collapsed during a asthma attack and I could not get any air in. I learned I need to be more aware of everything my body is experiencing. My Asthma almost killed me because I dismissed it as normal seasonal breathing difficulties. Now I pay closer attention to how my body reacts. Yes I will still win out over all the autoimmune problems. But I am more aware of how my body reacts to my environment. I am still in charge and I will live my life my way.

I have ocular Myathenia Gravis and was given a increasing dosage of Prednisone which resulted in three days in the ICU with pulmonary embolisms. I stopped the medication even though my symptoms returned. After doing so. I was put on another medication, pyridosstigmine which caused severe bowel issues and didn't seem to be helping with the double vision that comes along with this disease. I told my neurologist is just no point in continuing the medication, and then I brought up the digestive issues that accompany so many of these drugs that they just seem to brush off as part of the process. I told her, you are responsible for the quality of my life and not being able to make a 10 mile round trip to the post office, I live in a rural area, oftentimes not being able to make it back to into the house to the bathroom before losing it is not quality of life.

It's a rough call between being comfortable leaving your home and dealing with the bodily functions that are triggered unannounced, particularly when there are products to help control those functions. You have to be your advocate but you also have to educate yourself so you don't do something that'll be harmful in the long run.